This week, an investigative journalist David Tuller published his articles on PACE trial (Trial by Error first, second, last), exposing the flaws from one of the most influential clinical study for CFS. Cort Johnson’s blog does an excellent job at summarizing lengthy articles published over three days, so I won’t go into the problems of PACE trials and what the articles revealed. Instead, I would like to share my quick experience with PACE trial.
When I was hospitalized in May, I had to deal with team physicians who had no idea about ME. It was frustrating to have to explain that I had this serious disease that they had no clue about, and the acute exacerbation could have a long term consequences. The resident doctor on my team went home and did some “research”. Of course, what she read was the PACE trial.
I just saw an article from the Huffington Post about the Chilli M.E. Challenge, covering the challenge taken by Drs. Lipkin and Hornig at Columbia University (video) Center for Infection & Immunity (CII). It’s exciting to see this challenge pick up momentum, and ME receive positive media coverage.
ME patients have to pay for every little thing that involves any kind of effort, whether we are conscious about the expenditure or not. Just simply being awake has a toll, which I didn’t realize until recently because before my ME got more severe, my daily budget was sufficient enough for minimal functioning. The price each patient has to pay for any activity (or non-activity) is different depending on the disease severity and presentation, but one thing is universal: if we spend more than we have, we have to face PEM (post-exertional malaise) and potentially risk our long term health.